Wednesday, April 30, 2008

Logan has always really liked his Daddy. Dale gets more smiles and babbling than I ever do. It is so darn sweet! This is Logan's usual look when he has his Dad all to himself.Devin got to fly a kite for the first time last weekend! He did really well holding it all by himself.

Sunday, April 27, 2008

Wednesday, April 23, 2008

Tonight, I took Logan to the grocery store with me and I didn't bring his infant seat. I decided I would try to sit him up in the cart and....he did it!! He sat up in the cart!! At first he was tipping over, but I showed him how to hang on and he hung on the rest of the time! He was full of smiles and enjoyed the new view of the store that didn't include staring at the ceiling. I was so proud! He is so easy going and the best shopping buddy ever!

Tuesday, April 22, 2008

I'm am about 16 weeks pregnant now and yesterday we had an ultrasound where they confirmed the gender! It's officially a girl. A month ago my doctor told me he was about 80% sure it was a girl, but I thought we should wait to share until we knew for sure.

It didn't matter to me what we had, but I'm excited to change things up around here. Also, Devin, since I got pregnant, said he wanted a sister, so he is really excited.

Here are a few pictures. Good luck figuring out what you are looking at! She looks like an alien! A cute alien of course!

Wednesday, April 16, 2008

I have had a few requests from friends and family who were curious to see Logan's chromosomes. So, here they are. (it is neat to see someone's real chromosomes) Logan has the standard, non-inherited type of Down syndrome where he got an extra 21st chromosome from my egg or Dale's sperm. Basically, one of us gave 24 chromosomes instead of 23 each to make 46. As a result, Logan has 47 chromosomes. It was a random event that happens in about 1 in about 800 births. Over the past year, I was not always comfortable talking about the extra chromosome. But now, I'm so proud of him and the fact that he has Down syndrome.

Tuesday, April 15, 2008

I introduced Logan to solid foods when he was between 4 and 5 months old hoping that starting him early would help him develop the feeding skills he needs by the time he was a year old. I was hoping he would be chewing and swallowing well by now and enjoying eating, but that has yet to happen. In fact, I think he hates solid food more every day. He has always had problems with very thin foods so I have been thickening everything. When he tries to eat something that is too thin, it ends up shooting out of his mouth and he is also unable to swallow it. When he was younger I thought he was refusing to open his mouth for the spoon because he just wasn't used to eating yet, but now it is 7 months later and he still refuses to open his mouth most of the time and if he does open up, he only takes a few spoons fulls then he is locking his lips and turning his head away. He has almost never finished a jar of baby food and I tried real foods pureed and unpureed with no luck. He seems to like real food a little better, but he doesn't know how to keep the chunks in his mouth.

Yesterday, one of his therapists mentioned that we can expect him to be able to handle what we would expect from a baby at his developmental level, which would be about 7 months old. (It was hard to hear that said out loud for the first time.) So, I guess I feel like I was pushing him too hard. I am now trying to think of him as 7 months and we are going to start all over. I also wondered why he was only able to drink 6 ounces at a time. 11 month olds are supposed to be drinking 8 ounces, so I was worried that he wasn't getting enough. He also has not gained any weight since December. His doctor wasn't worried because he has always been heavier than babies his age, but as his Mom, I was worried that he wasn't gaining.

I feel like I did the wrong thing by starting foods early. I feel like I have been trying to feed him for so long with him resisting, that I have turned him off of food. I just wish I could go back and maybe if I would have waited longer, maybe he would like food more. I would give anything right now to see him finish his food and enjoy it.

Saturday, April 12, 2008

We went to Milwaukee yesterday and things went fairly smoothly. We did have to do a lot of waiting though (when do doctors not make you wait!) because we were scheduled for 1:30 and got moved back to 3:00, which became 3:45. The test took about 1 hour and then Logan took a while to wake up. They then held him for almost 2 hours to make sure he was ok from the anesthesia. The doctors did scare me a little just before they took Logan away. They said that kids with DS tend to wake up slower and if he needed a breathing tube during the test he would most likely have some breathing problems for a while afterwards like stridor. That scared me because he has just recently gotten over the stridor he had since he was born. Thankfully, he had no complications and woke up fairly quickly. He did have to have an IV and that worried me because when he had RSV, the nurses were SO glad when he didn't need one because I guess it would have been very challenging to find a vein on his very chubby body. Yesterday they managed to get one in his ankle, and they did it while he was asleep, so he didn't have to feel it. The results...he hears at a passing or normal level at high pitches, but at lower pitches he hears at a less than a passing level. The audiologist said the loss is not significant enough for hear aids. YAH!! But, he does need to have his hearing rechecked every 6 months to make sure it does not get worse. She mentioned that his type of hearing is very typical of people with Down Syndrome. Also, and most importantly, she said it should not affect his speech development, but of course his DS will affect his speech, we just don't have to worry about his hearing affecting it.

A few weeks back we visited Ruby and her family. Check out the pictures on her blog.

We are off to Milwaukee tomorrow for Logan's hearing test. It looks like he is almost over his cold and the Pulmicortnebulizer treatments seem to have stopped the cold from getting worse to the point of needed any other treatment. I was skeptical of the drug at first because breathing treatments have always seemed to make him worse, but this is different than albuterol and looks like it may work to maintain is health from getting really bad when he gets sick. If it keeps him out of the hospital we will definitely continue to use it.

Tuesday, April 8, 2008

Something that is driving me crazy!!!....I am sick of Pediatricians looking in Logan's ears and saying that he has the smallest ear canals they've seen. They say they can't see much and that is it! They are satisfied with this..."it's hard to see, I could see one part of one ear drum and it looked ok". If anyone knows where I can get a longer probe for their ear thing let me know. I will carry it in my diaper bag! All doctors should have one!!!!

Now that I have that off my chest...

We visited Logan's pediatrician today for his "pre-op" checkup. He's ok to go as long as his cold doesn't get any worse. So, Friday we will be going down to Milwaukee for a sedated auditory brain response test to check the quality of Logan's hearing. Around Christmas time his OT suggested we get his hearing checked because he did not seem to be responding at all to his musical toys or rattles. Also, he was rarely responding to his name or our voices.I took him to an ENT in the area in January where he failed a hearing test and fluid was found in his ears. We then had ear tubes put in to drain the fluid and we retested his hearing, but he still failed. The local ENT did not feel comfortable going any further with Logan, since he has some other issues as well (breathing, sleep apnea) and he needed a more extensive hearing test (ABR), so we where sent to the Children's Hospital in Milwaukee to see a Pediatric ENT Specialist. This new doctor still had little answers for Logan's difficulty breathing and sleep apnea, but he did retest his hearing (still a fail) and set us up for the ABR. Logan needs to be sedated for between 1-2 hours to complete the test, so of course I am nervous about the sedation. The test itself should be a breeze.In the last 2 months or so, Logan has started responding to sounds and his name so I am fairly confident that we will get good results on Friday. I just pray it all goes smoothly and that we don't get all the way down there and they tell us he is too sick to do the test.

Some of you may know that I enjoy making photo key chains! This started because I wanted one myself, but didn't want to pay the high price that some companies charge to make them. I love taking pictures (especially of my kids!) and love to show them off.

I would like to give away 3 key chains to the first three people to email me (melbaeten@hotmail.com) a picture and their address. Of course, the better quality picture, the better the key chain will look. And, you do not need to crop or shrink your picture, I will do that for you.

I am just going to ask for one thing in return...if someone asks where you got it, send them over to my blog and have them email me. For a limited time they will cost only $15 (shipping/tax included).

This is the one on my key chain....and yes, they can be redone as your kids grow, but they are made permanent with a glass-like clear coating so they are waterproof! I am giving away one like this one, a square one, and a dog tag style one.

Saturday, April 5, 2008

Logan came down with a really runny nose yesterday afternoon and it just hasn't stopped!! It is flowing constantly and he is fussy, which he never is unless he is really sick.It just figures!!!...he's been in perfect health for the past month and a half and now and when we are supposed to go to Milwaukee next week for his hearing test, he gets sick!!!!We've been waiting for this hearing test since January, and we could have gone in Feb but he got RSV. He has to be healthy because he needs to be sedated so he'll see his Pediatrician on Tues to ok him for Friday's test, but I fear now he is going to say we need to reschedule.It's at least 2-3 months before we would be able to get in again!!!

Wednesday, April 2, 2008

This post was inspired by Michelle. Please also read her post on this topic and enjoy the beautiful pictures of her daughter Ruby.

As some of you may have read on my blog in the past, approximately 92% of parents who receive the prenatal diagnosis of Down syndrome terminate their pregnancies. Recently, the American College of Obstetricians and Gynecologists’ changed their recommendations for prenatal testing for Down syndrome. In the past, it was only recommended that women over 35 be offered the testing, now the ACOG is recommending that all women be offered the screening. Currently, when women receive the prenatal diagnosis, not all doctors are providing them with accurate, up to date information about Down syndrome. Instead, women are overly inflenced to get the testing or to terminate the pregnancy. Consiquently, even more babies with DS are not going to get a chance at life. Right now, there is a new bill in the Senate called the Brownback-Kennedy Prenatally Diagnosed Condition Awareness Act that will hopefully ensure support and proper information for parents who receive a prenatal diagnosis of Down syndrome. After having my son and meeting so many families who have children with Down syndrome in person and online, it's clear to me that if the families facing a diagnosis of DS could meet our kids, they would see how wonderful and beautiful our children are and how much they belong to be here with us. I wish it wouldn't have taken having Logan to open my eyes to these amazing children and their families.If you feel strongly about this issue, please sign the petition to support the Brownback-Kennedy Prenatally Diagnosed Condition Awareness Act.

Tuesday, April 1, 2008

Today, we got to visit Baby Micah! Micah is going to be 3 months old this weekend and is awaiting heart surgery that will probably take place in May. He was born with an extra chromosone just like Logan. Devin had a great time playing with Micah's older brother, Nathan. Click here to visit their blog!